About Me

I read, cook, make art and try to figure out what the heck I'm supposed to be doing with my life. I chronicle it here. You can contact me at daphneannphillips(at)gmail(dot)com. If you'd like some design work, please contact me at www.daphnephillipsdesign.com

It's All About Me

Thursday, July 31, 2008

Yesterday was not the best day. Perhaps you noticed that in my little post.

But it got better. I made a really delicious dinner AND dessert (we have not had a dessert in weeks and weeks), and our friend Vanessa stopped by for an unexpected visit. Things seemed to take a turn for the better; Terri went to the pharmacy to pick up the Mepron (her doctor referred to it as 'liquid gold' because it is so expensive -- $1400 a bottle!!) and thankfully our insurance covered it. We were not at all sure that they would. So that was a huge relief. Terri said that she noticed that even though she was not feeling 'well', she really did not feel quite as horrible as usual, standing at the counter. I noticed, when she got home, that she was not looking quite as unwell as usual, too.

That trend continued through the visit; even though it can be really difficult for Terri to have visitors right now, she did pretty darn great through dinner and the conversation. I noticed a few times her spirits and energy seemed to flag, but she was pretty consistently engaged and kept up with the conversation -- it was really really great to see her looking a bit better.

After our guest left we talked it over; it seems that perhaps the antibiotics WERE doing something, after all. She has felt so ghastly being on them that it felt like she was doing worse than ever, and that was just unbearable. But perhaps enough time had passed (she hasn't been on them consistently since Sunday) that the effects were wearing off and she could see how she was REALLY doing. Not 'well', not *much* better, but definitely better. For the evening, at least. I have learned not to project too far into the future.

So... perhaps all hope is not lost. Yesterday was bad. We both felt awful and hopeless and so frustrated. So it was very, very good to have a not-terrible night. We needed it, especially after a really bad few days.

The new treatment goes like this: introduce a total of five (I think) new supplements, one every 2-3 days (to see if any of them make her feel bad), over a week or so, and then start the Mepron. The Mepron will probably make her feel terrible again. So we just have to keep that in mind. I'm not sure how long the tx for Mepron is.

She also called a different specialist who is very expensive, who many of her online friends (going through the same things) sees. She may decide to get a second opinion from him, which I don't think would be a bad thing.

So, maybe today things don't look quite as awful. I am not sure what her doctor is thinking -- everything we read says that it can take up to 4-6 months before you notice a difference with long-term Lyme. It's only been 10 weeks. Also not entirely sure what the tests meant, but apparently the tests can be extremely misleading. It's very confusing. I just hope she continues to feel not-ghastly for a few days, we could use an infusion of hope and some good feelings.

I'm just grateful to have had a nice evening and to see Terri feeling a little better, if even just for a few hours in the evening. It was really, really wonderful and gives me hope again.

2 comments:

It was lovely and although things are still rough, we can see that perhaps a tiny bit of progress was made. We are very worried about the next round of treatments and it will be ROUGH. So we're enjoying the next week or so of relatively smooth sailing.